Because prior studies suggested systematic differences among family members in their role as caregivers and in their views about care and quality for a loved one with dementia, we wanted to recruit family members that represented this variability. In addition, we considered it likely concepts of quality and of which elements are most important might vary according to the age and type of care needed by the loved one. Thus, in recruiting family members, we focused on two primary dimensions: (1) type of family member and (2) level of the loved one's functional cognitive impairment.
Family Members. Two types were considered: spouse and child/child-in-law.
We sought an equal representation of both; however, the demographics of long-term care resulted in a disproportionate number of children, as reported in Section 3.1. This is not surprising, since, as with nursing homes, most residents of assisted living facilities and board and care homes are among the older old (64% of board and care residents are aged 75 or older) and few have a living spouse (only 12% of residents of board and care homes are currently married) (Wildfire et al., 1995; Hawes et al., 1995).
Level of Care/Functional Impairment. We defined this in terms of residents who could be classified as receiving one of two types of assistance: light care and heavy care.
One category was defined as receiving a relatively low level of care. This meant that they received relatively little (or no) assistance with activities of daily living (ADLs). We defined this as a resident who receives no more than assistance with bathing and dressing. The second type of resident was defined as being "heavier care." This mean the resident received hands-on assistance with three or more ADLs on a daily basis (e.g., assistance with locomotion/walking, eating, toileting or transferring, as well as bathing and dressing).
Again, we sought equal representation along this dimension; however, because of a variety of factors, we had good representation among families of residents with heavier care needs but not equal representation. Factors limiting this included: (1) the relative "newness" of assisted living facilities in many areas, which meant residents had not yet "aged in place" and become more dependent; (2) limitations on the level of resident impairment imposed on the population of assisted living facilities by either State licensure regulations or by facilities' policies. To address this, we added a focus group with family members of residents who had exited or been discharged from assisted living facilities. Thus, in Portland, Oregon, we held two focus group sessions: one with families of current residents and one with families of discharged residents.
In addition to seeking representation along these two dimensions, we developed other criteria for selection family members.
Representation of Different Assisted Living Facilities: In each group, we sought to include family members from at least two or three different facilities. We were not seeking specific information about family member satisfaction with particular facilities, and we wanted to be sure that a particular focus groups's report on their concept of quality and experiences was not "colored" by their experience with only one facility. We achieved this goal in each of our sites.
Representation of Families and Residents with Sufficient Experience in Assisted Living Facilities. We felt that families whose loved one had recently entered an assisted living facility might not have had sufficient experience to help define key elements of quality. In addition, long-term care ombudsmen and consumer advocates report that often the factors which families and elders concentrate on in selecting a facility are not the same as the factors they identify as important after some months of experience in the facility (See also Spaulding, 1985). Thus, we sought to select family members with a relative who had cognitive impairment and had been living in an assisted living facility for at least six months.
Again, because of the relative "newness" of assisted living facilities, we did not achieve this goal in all focus groups. Thus in three of our sites, we had some family members whose relatives had been in an assisted living facility for less than six months. In general, however, we were successful in selecting focus group members with experience in receipt of long-term care and assisted living, since across the groups, (1) all but one resident had been in a facility for at least two months; (2) most residents had lived in a facility for at least six months (as reported in Section 3.1); and three-quarters of the family members and residents had prior experience with receipt of some type of long-term care services.
Representation of Families With Experience in Observing Facility Performance. We also wanted to ensure that the family members selected to participate in the focus groups had first-hand knowledge of assisted living. Thus, we set as a criterion that the family member made regular visits to the assisted living facility so that they had a regular, on-going opportunity to directly observe conditions in the facility and the care their family member was receiving (i.e., visited at least 3-4 times a month). We achieved this goal.